For those of you that don’t know, my son was diagnosed with Autism at 5 years old. He was originally diagnosed with Asperger’s Syndrome, which was then changed to PDD-NOS, which was then called High Functioning Autism and now, ALL Autism diagonisis are Autism Spectrum Disorder.
Autism is a spectrum disorder which means there are many different levels, many different symptoms and no two people with the diagnosis will ever be the same. I have a love/hate relationship with Autism and I am going to tell you why.
I love my son, but sometimes, I hate his Autism.
People don’t always realize that my son had Autism. This can be a blessing and a curse. We always expect him to expect more of himself and we don’t let him use his Autism as an excuse. This works out great in certain situations, that is, until his sensory behaviors kick in. People look at him funny and they judge him without knowing. I mean, how does he go from talking, in detail, about Pearl Harbor and World War II to rolling around on the floor, clicking. People don’t understand. I don’t understand and I hate that.
People Don’t Understand.
People don’t understand that High Functioning does not mean easier. It’s not easier. It’s not always harder, but it’s not always easier. When a non-verbal child can’t tell you why, you somewhat understand. You expect it because they are non-verbal. When my son carries on an hour long conversation about Megalodon or the sinking of the Titanic, but cannot tell you what happened 2 minutes ago, when you stepped out of the room or even, what he had for lunch an hour ago, you don’t understand. You don’t expect it because he is High Functioning. People don’t understand. I don’t understand and I hate that.
People don’t understand that living with a person that has High Functioning Autism is like walking a fine line between peace and chaos, 24 hours a day. My son can go hours and, on a very rare occasion, days without any noticeable behaviors. His behaviors can also, easily, be overlooked by those that don’t spend a lot of time with him. There are times where I correct his behavior or give him a reminder at the VERY start of the behavior and people look at me like I am insane. They don’t hear the tick. They don’t see the fidgets. They don’t know the signs. People don’t understand. I don’t understand and I hate that.
People don’t understand that sometimes, my son can act just like my 3 year old and that it can make things really hard to handle. Yes, my intelligent, handsome, 9 year old boy can revert to the level of my 3 year old in a matter of seconds. Hard to believe that the boy that was just showing you how much he knows about math or maple trees is now, gagging, shrieking and screaming at the top of his lungs, “DON’T SMACK ME!”? I probably wouldn’t believe it either, except that I see it. Sometimes, I see it everyday. People don’t understand. I don’t understand and I hate that.
People don’t understand why simple tasks can cause so much stress in our household. They don’t understand why we get frustrated when we repeat the same set of instructions for the 20th time and then shake our heads when he still doesn’t get it. People don’t understand why I get sad when I watch my son try to keep up with kids his own age or why it makes me sad that his 3 year old sister has hit a milestone that means she will surpass him soon. People don’t understand how hard it is to not compare my children to each other. People don’t understand. I don’t understand and I hate that.
People don’t understand that I have altered my life to keep him healthy, thriving, happy and safe. They don’t understand that I homeschool my son because he just could not handle the big school environment. People don’t understand that I spend my days and nights researching programs and items for him, crying and worrying, laughing and smiling. People don’t understand, but I don’t need them to.
We have awareness. Now we need understanding.
I do what needs to be done. I do what works for him. I don’t care what teachers, doctors or other parents think. What works for child X may not work for child Y. I do what needs to be done for MY son and MY family. I do what works for us. I do what I think will help him in his life, not just his Autism. I want him to know how to live and not just how to live with Autism. People don’t understand, but I do.
I do because I love my son.
I love my son so much that it burns from the inside out.
I love him and would do anything for him, but yes, sometimes I hate his Autism and the lack of understanding that goes with it. Not just from other people, but from me as well.
Autism Awareness isn’t just about people that know nothing about Autism. Autism Awareness is for everyone, even those living with it or those helping someone that lives with it. There is always more to learn, always more to accept and always more to try to understand.
For more information on Autism, Autism Awareness or Autism Understanding please visit the TheMighty.